This is Al. He is my partner of 14 years. We met as undergraduate students in the first term of our first year. If you want to hear his experiences of his illnesses and some chat about software development, you can find him on twitter @theheadofabroom.
I want to give a bit of detail about Al’s illness and introduce him. Everyone has different experiences of care and I think this is a necessary post to put my own in context. He is quite open about his disability and I’ve shared nothing he has not disclosed elsewhere or does not want me to share.
For many people, their knowledge of ME, is along the lines of ‘I knew someone with ME once, but they eventually got better.’ Those are the ones you hear about. The rest are the #MillionsMissing whose symptoms are so severe that they are often prevented from leaving the house or engaging in raising awareness of ME. The ME Action Network estimated 250,000 people in the UK and millions globally have ME with many more undiagnosed.
Here is a quick primer on ME/CFS from Charles Shepherd, medical adviser to the ME Association
ME/CFS is only one of Al’s diagnoses. It’s the one that is hardest to understand and greatly stigmatised.
ME and Us
Beyond a quick introduction to ME I want to outline what our experience is, because variability is a crucial part of living with ME. It affects people differently, and the same person can have a range of severity and symptoms at different times. So, what exactly are we dealing with?
Symptoms and daily living
Al has collected a vast array of symptoms over the last few years. These include debilitating fatigue, chronic pain, insomnia, headaches, cognitive impairment (often referred to as brain fog), sore throat, muscle weakness, poor regulation of body temperature, dizziness and light and sound sensitivity.
On a good day Al can get out of bed, make a sandwich and chat to me or another person for up to an hour. He can move to the lounge using his walking stick. He can take short trips outside in his powered wheelchair.
On a bad day, when Al has triggered PEM, he is bedbound. He will lie in bed with earplugs in and a sleep mask on. He will need help with the most basic tasks like dressing, moving or eating. He will be unable to talk in sentences. This level of illness would not even be considered the most severe that ME can get. Some patients are too ill to eat.
The care Al needs varies, but his basic level of care need has increased steadily over the last two years. When he wakes up, or I get in from work, I have no idea what the mix of symptoms and challenges will be and what I will need to do. Sometimes Al doesn’t even have the words to tell me what he needs. This variation is hard as a carer as it means demands constantly change, and work and care need to be constantly rebalanced and reprioritised.
One of the main strategies Al uses to manage his condition is pacing. This means managing his energy levels carefully to avoid a crash (onset of PEM). This often means treating his physical and mental energy as a precious resource which must be prioritised. His quality of life depends to some extent on his autonomy to use his energy is ways that he finds fulfilling. My caring role has to support his pacing and his autonomy as best we can.
I buy and prepare everything Al eats. I prepare meals in advance and leave them for him when I am in the office. He will generally not eat a hot evening meal without me there to do it as he is too tired in the evenings. He is often in pain trying to lift the kettle so he rarely even makes his own hot drinks. I do all laundry and household tasks. I have a cleaner for two hours a week but do all other jobs myself. This week I spent a morning while off sick fixing the washing machine using video tutorials. I manage all bills and household admin. I manage all of Al’s medical and benefits admin. There is a lot of it – GP, three consultants, several benefits and disability exemptions. I do hours of care work every day. I still have to do it when I am sick, exhausted, sad, stressed or all of the above.
This is just the practical care work. Caring involves a huge amount of emotional labour too. This has been a huge element for us as we adjust to new realities and navigate the process of Al becoming disabled. I’ll talk about that journey in another post.
This post barely scrapes the surface of our experiences. It seems in many ways wholly inadequate to describe the realities of care work. But it’s a start. And one readers can build on by following our twitter updates on the daily grind of disability and care, and by watching out for the posts to come. Ask questions too – maybe I’m missing something obvious that would help explain better.